Symptoms better when walking/moving

[tedstark]

Anyone else feel at their worst after sitting/lying down for some time? My primary symptoms or neurological/cognitive, and I feel like all of my head symptoms are at their worst when I sit or lie down. Seems like the movement of blood away from my head when walking or working out helps me.

Any ideas?

Thank you

 

[Viala]

I am somewhere in the middle. In the morning I feel really tired. After getting up and moving a bit I start to feel better. But then when I do too much, which is usually doing anything, it's best to lie down again. Then after some rest I feel better again, when I get up. I suppose it has something to do with lymph and blood flow.

 

[Blue Jay]

I'm like @Viala. I wake with a migraine-type headache and generalized pain. I sit up for a while, before leaping (I'm joking) out of bed. When I'm moving I feel better but after an hour or so need to lie down for around 30minutes. I can do things (light household tasks) for a couple of hours but need to lie down for at least an hour in the afternoon.

 

[Woof!]

I definitely feel worse if I sit too much (especially my legs, knees and back). When it comes to lying down, it's the best thing to do when I'm badly fatigued and the worse thing to do when I can putter around and tackle tasks.

Maintaining one's abilities with ME/CFS requires a balancing act - not too much sitting or lying around as much as not too much physical or mental exertion. Getting this just right (and a few other things) helped me go from serious to moderate, and for this I am all so thankful.

@Blue Jay - I used to wake up with migraines (often at 1 a.m., other times closer to dawn) more days than not, but 80% of that stopped when my bedroom got a deep-clean and I put anti-dustmite covers on my pillows and mattress (less than a $75 investment). Give it a try - you may be sensitive to dust mites! I still wake up with occasional migraines due to neck position and in generalized pain which I handle with stretching, getting up slowly (like you) and eating breakfast (getting my blood sugar up helps), but my quality of life is soooooo much better.

When it comes to good mentors for movement, we don't have to look a lot farther than our dogs. Yes, dogs get everything they can out of a good nap, but they are also quick to get moving, to move on socially and psychologically. We as humans would do well to do the same (as best as we can)! When we stop moving, negative effects on our bones, musculature, homeostasis and psychology tend to perpetuate. This is why physical therapy becomes more important the more time we spend lying down. Even if we don't have the strength to sit up and move our limbs ourselves, having someone else assist several times a day is pivotal to our circulation, muscle health, daily detoxification (respiratory, hepatic, GI, renal & dermal) and mental health.

 

[borko2100]

Paradoxically, despite what we know about this illness, I've also noticed that if I am more active I feel better than if I am completely sedetary. Granted, I can still get PEM / crash if I am too active obviously. It is quite strange, maybe it has something to do with blood flow indeed.

 

[nerd]

I can imagine that it might be the adrenal function that contributes to this. More activity means more hormones. But too much means an exhaustion of the metabolites that enable the adrenal function.

 

[Blue Jay]

occasional migraines due to neck position

I'm pretty sure this is the cause of my migraines @Dr.Lynne. I should have mentioned I have a good stretch before getting up. I know I have some wear and tear damage to my spine. I do yoga stretches during the day, too, which I find helps. My circumstances don't allow for much sitting around but I try (with emphasis on the try) to strike a balance.

 

[vision blue]

What are your vital signs when laying down? Might be hard to compare to active movement but still sonething might be a red flag - heaet rate, bp, temp, glucose, respiration rate. Also try your digit span (short term nemory test) when lying down vs moving around.

Im toast if i dont lay down 3 hours during day. One hour before lunch and two hours later in day. Can miss an occasional day- then the next day gave to make up the hours practically hour for hour like im punching some twisted time clock and have to get my hours in for the week.

Read somewhere a sign of cfs was that yiur better able to understand what you read while laying down.

Does it feel like a restless leg type thing- uncomfortable to be still?

 

[vision blue]

Ps howa your morning cortisol level? High enough?

 

[Woof!]

I'm pretty sure this is the cause of my migraines @Dr.Lynne.

For help with my neck when I sleep, I swear by D-Core pillows. Here's one link, so you can see what they look like. They're available lots of places online.
https://www.walmart.com/ip/Core-Pro...p.ds&msclkid=a1f1a3f0087a12090bfcc2adb45e1b29

 

[nerd]

For help with my neck when I sleep, I swear by D-Core pillows. Here's one link, so you can see what they look like. They're available lots of places online.
https://www.walmart.com/ip/Core-Products-D-Core-Cervical-Spine-Support-Pillow-Ease-Neck-Spasms-Tension-Headaches-Midsize-Firm/132803298?wmlspartner=wlpa&selectedSellerId=433&adid=22222222222000000000&wmlspartner=wmtlabs&wl0=e&wl1=o&wl2=c&wl3=10352200394&wl4=pla-1103028060075&wl5=&wl6=&wl7=&wl10=Walmart&wl11=Online&wl12=132803298_10000000285&wl14=D-Core pillow&veh=sem&gclid=a1f1a3f0087a12090bfcc2adb45e1b29&gclsrc=3p.ds&msclkid=a1f1a3f0087a12090bfcc2adb45e1b29

How firm is it really? I used a seaweed pillow for a long time which is as firm as I can imagine. I think it's comparable to whole grain pillows (which also exist btw). It gradually forms a pan where your head is and supports the neck with a strong pressure irrespective of your movements. It doesn't snap back unless you mix and squeeze the seaweed by hand.

It seemed to help sleeping on my back. Sleeping on my sides usually causes pain and I have to avoid doing this subconsciously. However, after a long time, I developed a tense neck from it, so I switched back to my previous orthopedic soft foam pillow. It's easier to fall asleep with a soft pillow, I noticed.

 

[godlovesatrier]

To be honest I never felt better when I was active. Dizziness would slowly increase over 5 to 10 minutes or I'd be fatigued extremely quickly and wouldn't be able to tolerate any further push. I guess there must be others like me who are the same.

Now though after Joshua's protocol I can do a lot. I'm at a solid 80%. I can do chores every day. Resistance exercise every day. Go for walks 3 or 4 times a week 30 minutes in duration.

I don't wake up with PEM the next day and if I get fatigue it's usually because I'm sick not because I have PEM.

However it's taken me 3 months to get to this stage after getting my second covid vaccine. Vaccines cause a relapse basically which lasts several months.

One thing I've found is that I've been having upper back problems. Nerve pain, muscle strain pain all in and around the shoulder blade and upper back. But this is made much much better by exercise (walking). I don't do cardio by the way and haven't got any interest in trying at present. I find it interesting that it makes the pain in my back better.

Walking has therefore become a bit addictive again. Who'd have thought! Soon to get my flu vaccine though so I'll relapse I'm sure for awhile.

 

[Woof!]

How firm is it really?

I would say comfortably firm, that is not too firm and not too soft. What I love about this pillow is how it varies when you turn it 180 degrees. Sometimes my neck needs more support and sometimes less, and one pillow offers both. That said, I have three of them. A larger one when my neck wants it, a medium one when my neck wants that instead (it is a little less firm overall), and a small one just for traveling. Honestly, that small pillow has traveled with me through half of the states of this country, coast-to-coast on planes, trains, boats and automobiles in one of those take-the-air-out travel bags that collapses it to half its original size.

 

[Woof!]

Walking has therefore become a bit addictive again. Who'd have thought!

What an excellent addiction!

 

[Shanti1]

I was thinking the same as @vision blue What are vitals lying vs after moving around a bit? Maybe your blood pressure and heart rate are so low at rest that blood flow isn't getting to the brain and muscles.

 

[Blue Jay]

For help with my neck when I sleep, I swear by D-Core pillows.

Thanks @Dr.Lynne. I'll look into it.

 

[tedstark]

I was thinking the same as @vision blue What are vitals lying vs after moving around a bit? Maybe your blood pressure and heart rate are so low at rest that blood flow isn't getting to the brain and muscles.

blood pressure has always been good whenever measured :/

 

[Hopeful1976]

Paradoxically, despite what we know about this illness, I've also noticed that if I am more active I feel better than if I am completely sedetary. Granted, I can still get PEM / crash if I am too active obviously. It is quite strange, maybe it has something to do with blood flow indeed.

I have thought this for many years. I can and do improve significantly, albeit short lived, after a short amount of activity. Yes it's a balancing act. If there's something in the blood causing our symptoms, perhaps moving the blood around changes/alters/modifies that something, hence why we feel better for a tiny while. I did write to Ron Davis about this, as I'm pretty certain there is the issue - but no reply sadly. I feel the symptoms lesson considerably after movement. Yes they come back, but that movement is causing something positive to happen